BBC Radio 4 interviews St Mark???s Hospital about Patients Know Best

The episode is titled “A Great Disruption” because it is based on the wonderful book No Straight Lines by Alan Moore. Alan’s book pulled together some amazing stories about bottom-up innovation from across all industries and from all over the world. The episode featured several of these examples, including his section on Patients Know Best. (For the latter link to work, you need to log in with LinkedIn, Twitter or Facebook, but it is well worth it, the experience of reading the whole book and sharing it with contacts is a great one.)

It is always a pleasure to hear Alan speak. Here is a transcript of part of his interview:

We are talking about business and organisations inherently changing themselves to be socially organised and orientated around a different type of belief system. If you take an organisation that says by coming alongside our customers, by actually saying our customers are our co-creators, our co-workers, our marketeers, we are now having a very different type of dynamic relationship. We are learning as an organisation by listening and working with our customers. We are making better products because in fact our customers are telling us how to do that.

He really sums up what PKB allows clinicians to do. The patient, clinicians and carers all appear on the same “Team” tab in the user interface, because they all part of the same team. The clinicians view the patient as a co-creator of knowledge about the patient, and a co-worker in solving the patient’s problems. They also rely on the patient to spread information to other clinicians they encounter at other institutions, improving safety and lowering costs. The result is better health but also better health care systems.

I was impressed by how much Peter already knew about us, he and his team had done their home work, and it meant the questions he delved into were detailed and thoughtful. It was a pleasure to be included in the program. The program also included an interview with Dr Simon Gabe, consultant at St Mark’s Hospital. His work on patient-controlled records was highlighted by the Patient Information Forum as the gold standard for patient record access, and it worth watching videos of him and his patients talking about PKB. He sums things up beautifully:

Before this, and this is still what happens, is you ask someone to give you the relevant bits of the notes to photocopy them, and they then form parts of your notes. It does work, it’s not a problem, except sometimes they don’t photocopy the right bits, or the bits that you particularly want. And part of that means that tests can get repeated and that can be unnecessary, unnecessary blood tests, unnecessary x-rays, and that’s more serious. The other thing that I really like about this is that the focus is the right way round and the focus is very much on the patient, and it’s the patient who controls their notes, and who allows people to have access to them. If you think about it, what happens in hospitals and GP surgeries at the moment is the very opposite. We’re in control of the notes, and patients have to request to see it, and the very opposite is happening for Patients Know Best. And that’s fundamentally correct, because if it’s you, if it’s your notes, and you want to see them, somehow it seems wrong that you have to request permission to do that.

You can listen to the full episode here:

And the full transcript of the clip is here:

Peter Day: Now to a new British company trying to disrupt the way health care works in the interest of the patient. This subscription web site, run by the start-up called Patients Know Best, takes all my medical records and then with my permission makes them available to the doctors, specialists, and other professionals who need the data to enable them to help me. If the idea sounds familiar well it bears some resemblance to the great big plan to computerise all National Health Service records which foundered a few years ago. But Mohammad Al-Ubaydli has devised his new system to function around the patient, not the hospital, not the GP. He happens to be a multi-tasker: a medical doctor, a software specialist, and a management consultant. He looks at health care with a non-traditional perspective, you might call it a disruptive one.

Mohammad Al-Ubaydli: Medicine is, basically, an information industry. It is all about knowing the right information about the right person at the right time. But the information technology has only recently managed to deliver the right devices and software that meets the extreme demands of clinicians. So things that transformed banking, retail and so one earlier, they had the right form factor but only now gets to health care. But the other side is, a lot of the people pushing IT for transformation are trying to use the IT to change health care, rather than the reverse, it should be the clinicians leading, the users and the patients leading, not the technologist saying “I have this box, now let’s reorganise the health service around it”.

PD: I cannot underline the importance of that remark. IT people come in and try to reorganise things around what they machines can do.

MA: Correct. And the history of innovation is all about the people at the cutting edge of practice in their industry advancing things further using new technology. It is never the reverse.

PD: And you call this a movement.

MA: We do. The switch is between traditional medicine, which is called paternalistic medicine – doctor speaks, patient listens – to participatory medicine, where the patient is part of the team, and together they are arriving at the solution to that patient’s problem.

PD: Isn’t this precisely what the computerisation of the National Health Service was supposed to do about ten years ago, that enormous project that failed miserably.

MA: That was the intention, which is: Wouldn’t it be useful if the people who needed the information had it when they needed it. But then they went from a good outcome to a poor implementation. The archite
cture was wrong, it was around a top-down forcing of a database with control centrally. And we say actually it works bottom-up so you have a massive database which is controlled by each person about whom it holds data. And that is how you, first of all, ethically and morally it is the right thing. The citizen should control the data sharing. But legally, it complies with all the difficulties that people had about, Am I really allowed to share data with that person? Does the patient really want it to happen or not?

PD: Because the patient is in the middle of this. The patient is a subscriber and joins people to his or her database, essentially.

MA: Yes, the only qualification is that they get power of control, but not the burden of control. So the patient can just say to their nurse: Do you mind inviting everybody else who I need. And I can override anything you do if I did not like what you did, but do you mind just inviting my GP or inviting my home nurse and so on. And so the person gets to get as much health care as they need but without requiring IT literacy or having to do those manual bits of work themselves.

PD: Mohammad Al-Ubaydli of Patients Know Best. Some patients encounter particular problems with their health care records when they are transferred between hospitals. One place where transfers happen a lot is St Mark’s Hospital in London, where they specialise in very complicated intestinal conditions. They often take over the long term treatment of adult patients transferred form children’s hospitals. Dr Simon Gabe is a consultant gastroenterologist at St Mark’s and he is a keen enthusiast to a patient-centred approach to medical data.

Simon Gabe: Before this, and this is still what happens, is you ask someone to give you the relevant bits of the notes to photocopy them, and they then form parts of your notes. It does work, it’s not a problem, except sometimes they don’t photocopy the right bits, or the bits that you particularly want. And part of that means that tests can get repeated and that can be unnecessary, unnecessary blood tests, unnecessary x-rays, and that’s more serious. The other thing that I really like about this is that the focus is the right way round and the focus is very much on the patient, and it’s the patient who controls their notes, and who allows people to have access to them. If you think about it, what happens in hospitals and GP surgeries at the moment is the very opposite. We’re in control of the notes, and patients have to request to see it, and the very opposite is happening for Patients Know Best. And that’s fundamentally correct, because if it’s you, if it’s your notes, and you want to see them, somehow it seems wrong that you have to request permission to do that.

PD: Yes but this is challenging the traditions of health care, it is isn’t it, that’s the way they’ve always worked, and you’re rather protective of this, it’s part of your skills and eminence, isn’t it?

SG: No, definitely not, but in practice –

PD: – No no no, come on, this has been going on for a long long time.

SG: And you are absolutely right, there is a protective nature to this. But we’re in a much more open society, things are changing, and this seems very right. There are lots issues that will develop from this type of system, I have no doubt, they need to be thought about and tested, but this is a beginning.

PD: Dr Simon Gabe at St Mark’s Hospital in West London. Patients Know Best involves thinking about thinking about health care in a different and unconventional way. You could say it is applying design ideas to what an organisation, in this caese health care as a whole, is trying to do.